Myeloma ... living with a killer
there have been times during the past couple of weeks
that it has taken all the resolve that I have not to have total melt downs
one of the side effects of the chemo drug that I am on
is the inability to stop from having crying spells
personally I think I am doing quite well
as I have only had three
three ... one ... two ... three
all of them have had to do with the loss of control
I never knew or at least recognized how anal I must have been
about being in control of my life
perhaps it was for much of my life I did not feel that I was in control
being abused does that to people
confronting the abuse and facing it head on gave me the control that had been taken away from me at the age of 4 ...
but here I was 51 years later
still hoping that I would be able to get through this with dignity and self respect
it is funny when you do personal care for others
how it takes on a whole new role when you really need to do it for yourself
that all of a sudden it becomes much more important
because all of a sudden things that were once easy
are no longer ......... easy, if only it was ....
but, I am still too proud,
too independent
and way too in need of being in control
to give in and ask for help yet ...
but the family and friends are circling
I was told tonight that when the time comes that there are a group
of friends that will take turns coming to spend the night
so that I do not have to be alone
that I should never be afraid to ask or to be alone
it is not nor should it ever be considered to be a part of the equation
that is the way it is ...
last week I feared that someone I have known for over 20 years
had also been diagnosed with this dreaded disease
and I felt horrible and I grieved for her
it was only in the light of the next day
that I recieved an email from her to let me know
that she was a member of the group only because her mother had been a myeloma patient
and has since passed from the disease and this is her way of helping others
she has been a source of support ever since
giving me her home phone, encouraging contact and for her to do what ever she could to support me, including sitting and holding my hand if need be or to travel with me to Disney to celebrate remission when the time comes ...
and I realized again how blessed I am with the people in my life ...
one meets people on their journey through life
I learned a long time ago from my mother,
that if you treat others the way that you would like to be treated
that you will do okay in life ...
it is a lesson that I have always tried to follow ...
I know that this is a difficult time for many in my life
but I also know that each and every one is there for me ...
encouraging and doing what it is that they are able to do ...
and I love each and everyone for what they are doing ...
I know that for some, there is too much information
but for others they do not feel that they have enough ...
for me to talk openly and honestly about this disease and how it is effecting me
is my way of dealing with it and it is also my way of informing people about myeloma itself
it is not a common well known cancer ...
it is very rare
it is not genetic and is not commonly something that family members would get ...
it is an enviornmental disease that if they can figure out the hows and whys
they might be able to stop it from happening to others ...
right now there are approximately 6000 Canadians living with myeloma
some records show that almost 2000 Canadians will be diagnosed this year
some people do not think the life expectancy is very long ...
the people I am meeting are looking at 4 to 5 years after transplant ... or 9 to 10 years ...
I have heard rumours of a 22 year survivor, a retired nurse that lives here in the London area ...
that is my goal ...
not to give up, to encourage research for drug and treatments ...
there may not be a cure right now, but who is to say in 2 years what will happen ...
in the past couple of months that I have been diagnosed, 2 drugs have been approved by the Ontario Government for payment ... that is huge!
my goal is to also teach people about the disease itself ...
to look at the patterns, to discover the commonality ...
my past experiences might help to lead to some answers ...
but I would really like to bring this disease to the public
to teach them about it and the importance of folks taking the time to look after themselves and to take themselves to the dr. when they do not feel well rather than to avoid the issues like I did.
Looking after oneself ...
it all goes back to that ...
whether doing personal care that you never thought you would look at,
as doing self personal care ...
or looking after oneself ... before it gets to be a need ...
go for the annual physical and blood work ...
if the dr. tells you you need to go for a test go for it ...
take the time for you ...
we are all worth it ...
some of us just need more time to discover it and follow through with it
life is for living ... one day at a time if necessary ... but definitely for living !!!!
there have been times during the past couple of weeks
that it has taken all the resolve that I have not to have total melt downs
one of the side effects of the chemo drug that I am on
is the inability to stop from having crying spells
personally I think I am doing quite well
as I have only had three
three ... one ... two ... three
all of them have had to do with the loss of control
I never knew or at least recognized how anal I must have been
about being in control of my life
perhaps it was for much of my life I did not feel that I was in control
being abused does that to people
confronting the abuse and facing it head on gave me the control that had been taken away from me at the age of 4 ...
but here I was 51 years later
still hoping that I would be able to get through this with dignity and self respect
it is funny when you do personal care for others
how it takes on a whole new role when you really need to do it for yourself
that all of a sudden it becomes much more important
because all of a sudden things that were once easy
are no longer ......... easy, if only it was ....
but, I am still too proud,
too independent
and way too in need of being in control
to give in and ask for help yet ...
but the family and friends are circling
I was told tonight that when the time comes that there are a group
of friends that will take turns coming to spend the night
so that I do not have to be alone
that I should never be afraid to ask or to be alone
it is not nor should it ever be considered to be a part of the equation
that is the way it is ...
last week I feared that someone I have known for over 20 years
had also been diagnosed with this dreaded disease
and I felt horrible and I grieved for her
it was only in the light of the next day
that I recieved an email from her to let me know
that she was a member of the group only because her mother had been a myeloma patient
and has since passed from the disease and this is her way of helping others
she has been a source of support ever since
giving me her home phone, encouraging contact and for her to do what ever she could to support me, including sitting and holding my hand if need be or to travel with me to Disney to celebrate remission when the time comes ...
and I realized again how blessed I am with the people in my life ...
one meets people on their journey through life
I learned a long time ago from my mother,
that if you treat others the way that you would like to be treated
that you will do okay in life ...
it is a lesson that I have always tried to follow ...
I know that this is a difficult time for many in my life
but I also know that each and every one is there for me ...
encouraging and doing what it is that they are able to do ...
and I love each and everyone for what they are doing ...
I know that for some, there is too much information
but for others they do not feel that they have enough ...
for me to talk openly and honestly about this disease and how it is effecting me
is my way of dealing with it and it is also my way of informing people about myeloma itself
it is not a common well known cancer ...
it is very rare
it is not genetic and is not commonly something that family members would get ...
it is an enviornmental disease that if they can figure out the hows and whys
they might be able to stop it from happening to others ...
right now there are approximately 6000 Canadians living with myeloma
some records show that almost 2000 Canadians will be diagnosed this year
some people do not think the life expectancy is very long ...
the people I am meeting are looking at 4 to 5 years after transplant ... or 9 to 10 years ...
I have heard rumours of a 22 year survivor, a retired nurse that lives here in the London area ...
that is my goal ...
not to give up, to encourage research for drug and treatments ...
there may not be a cure right now, but who is to say in 2 years what will happen ...
in the past couple of months that I have been diagnosed, 2 drugs have been approved by the Ontario Government for payment ... that is huge!
my goal is to also teach people about the disease itself ...
to look at the patterns, to discover the commonality ...
my past experiences might help to lead to some answers ...
but I would really like to bring this disease to the public
to teach them about it and the importance of folks taking the time to look after themselves and to take themselves to the dr. when they do not feel well rather than to avoid the issues like I did.
Looking after oneself ...
it all goes back to that ...
whether doing personal care that you never thought you would look at,
as doing self personal care ...
or looking after oneself ... before it gets to be a need ...
go for the annual physical and blood work ...
if the dr. tells you you need to go for a test go for it ...
take the time for you ...
we are all worth it ...
some of us just need more time to discover it and follow through with it
life is for living ... one day at a time if necessary ... but definitely for living !!!!
No comments:
Post a Comment